Noreen

I guess we'll just have to keep our eyes on it. Here's some info from the CDC:

http://www.cdc.gov/ncidod/dhqp/bp_xmrv.html

I wonder how hard it is to see if you carry this virus? I'd just like to know!

Thanks Cat -

I had checked in late january and saw nothing. I appreciate your sending the link.

Noreen

Thanks, Maxine

Interesting...................

At age 50, I remember symptoms going back to age 22 in Oct. of 1981-----5 months after my son was born. I was diagnosed with MVP in 2002 by Dr. Silverman who is a cardiologist. Symptoms were all heart related---tachycardia, flip flops---panic attacks. From 1990 on symptoms were controlled well on beta blockers. In 2000 I crashed, and everything got worse. Wow how time passes!

I've been hypermobile all my life, and family and friends marveled at the different positions my body could get into----yet because my fingers didn't bend back far enough---(too bad he didn't check the joints in my hands which are like rubber), I was told that I couldn't possibly have EDS----oh and I wasn't skinny enough also------hmmmm. Well I'm on wellbutrin, and after the 30 pound weight gain from this, my weight has been steady. If I went off wellbutrin, I wouldn't be able to walk. I pressed on because my shoulder blade dislocated a couple times, and had subluxating all over my body------including my neck.

I found a geneticist, and have since had Classical EDS with joint hypermobility, vascular involvement, and spine instability diagnosed. Also confirmed at the NIH EDS study which is still ongoing. Because of the EDS I have a vertebral artery hung up somewhere between my head and neck due to hypermobility of c1-2 joints. The blood flow is cut off, and the right vertebral artery is enlarged because of this (making up for the one on the left which is missing in my brain MRAs)-----and this was noticed as far back as 2002 before my cervical spine surgery.

What do you think would have happened if I listened to the Doc who misdiagnosed me?

Pursue second opinions if you feel you have hypermobility, as the consequences could end up worse then mine were. See a geneticist who specializes in EDS/JHS to get the correct dianosis.

I'd like to see some studies on spine instability as a result of EDS, as upper spine compression can also result in ANS dysfunction---(In a big way!

) Especially with brain stem syndrome.

Maxine :0)

I thought I had the article I read which stated that EDS accounts for spondylosing spondylothesis but I could not find it. That dx was the reason I needed spinal fusion - L-4L-5 and s-1 kept going out of joint - not fun. I did finally find out what my 'knee marble' was through my EDS research. It is called a spheroid a buckshot sized encapsulated fat tissue - the radiologist, the rheumy, and my PCP did not have a clue what is was. It didn't hurt just rolled around within my knee - grosssed out some people. I can still touch the floor flat with my left hand even with the fusion.

What is the advantage of going to a geneticist and how does one do that? My dx at my original rheumy appt in 97 or 98 was Benign Joint Hypermobility Syndrome 9 out of 9 on the Beighton (?). Skinny? - I'd never fit - "Patient presents as a well nourished female...."

Dlo you have a link for the NIH EDS study?

As usual I enjoy what I learn from so many of you. I have not been to therapy... maybe I don't want to get in touch with my "crazy side" I know it is there but I am a private reserved person and feel the need to cling to that.

I do want to ask a question... have any of you had therapy with your family members? Is so was it helpful?

Right now I am hurt by my husband's frustration with me. he is super healthy and although he tries (sometimes) and is a really great man... my illness is a huge stresser on his life (and our relationship). He doesn't "get it".

I often feel very useless but mostly I worry about how my disability impacted my relationships.

would therapy be helpful to improve relationships with others?

Yes, but would he be willing to go? It can be a safe place for both of you to express yourselves and feel like you are being heard.

A good therapist should be able to give you tools to use, such as a code word for when you are totally wiped out. It's a lot easier to say 'Marshmallow' for instance than three paragraphs trying to explain which six symptoms have you down now. Obviously, that's just an example but you get the drift, I hope.

The therapist should be able to help you celebrate the things you can do together and work with you so he doesn't feel he has to give up everything because you can no longer do something.

Well, I've got an appointment. May 18th. We shall see if it helps, I have a list of questions ready for the first appointment; my best friend says that they are all "trick" questions, but I'm not spilling my soul to someone unless I can trust them. I've been burned by people I thought were my friends, so I'm overly cautious with my feelings. Respect is also a huge issue, and I need to know upfront where we both stand. I will not be treated like a hypochondriac nut and I will not tolerate a patronizing attitude!

Firewatcher-

I understand where you are coming from - essentially you are interviewing a colleague to see if you want to work with them. After all, you are the source of my life saving mantra - "I am a bland potato." I don't know if it still the case but psychiatrists used to be compelled to go through therapy for years as part of their training.

You must have trust, you must have respect, and a therapist doesn't have the credentials to diagnose medical conditions.

{hugs}

Noreen

Reen,

I did report her,but I ended up being micro managed from that office until some staff changes were made. That's what I get for standing up for myself. I reported her the same day, but coudln't rememeber her name. I was so upset because of that, but they said they would know who it was based on the time and date I spoke to her. They have a way of figuring it out. Now I know who is was, but they are still employed. The so called apology letter from the head nurse was so cold and sarcastic it was just plain ignorant.

My therapist was helpful, but I switched to my other therapist that I went to when I first crashed with POTS. They are both GREAT, but my insurance covered her better. Both therapists have gotten me through some rough times, and both validated my illness was real.

Reen, it's so much worse then I imagined-----the struggles I ended up with due to this incident. I thought it would be easier to get over, especially when someone else stepped up with a simular complaint. I still strugle with Trust issues, and I think it's obvious in some of my postings today. I couldn't live with myself doing something like that----especially to someone who is sick and vulnerable. I remember being on that hospital campus one day because I was hosting a patient who came to see the ANS doctor there. She was pulling some research from the library and I got disoriented while trying to find where I parked. I was such a mess. It was July, and hot out. I kept going the wrong way, and I don't know why because I had been on the campus 1000 times. When I finally got pointed in the right direction, I slowly walked to my car. My body started to shut down, and I had to walk very slow. A woman was coming from another direction, and I don't know if she was a doctor, but she must have noticed something because she looked at my face, walked by, and then started to turn back towards me, but I lokked at her and gave an, "I'm OK smile". I really wasn't OK, and I felt embarrassed.

I think about times like this, and wonder what this nurse must think about------how she ended up like that. That day is like many days I have dealt with, and I've struggled beyond that with other issues----like PAIN.

There's days when I'm angry and feel like hunting the troll down and telling her what a piece of work she is, and others when I just feel sorry for people like that who have to entertain themselves with stuff like this-------their lives have to be pretty unhappy to want to suck the life out of people like that.

Maxine :0)

Maxine-

I totally understand having trust issues after something like that - it is a violation - a type of rape, if you will. That is why I said report her to the licensing board and the State Nursing Association. It is not too late to write a letter and might even be cathartic for you especially in light of the fact that she has further abused patient trust by doing this to someone else. I wouldn't thought a complaint to the employer would get you far - even though it should.

Ethics are a big issue these days. You mentioned the practice is associated with a hospital - depending on how you feel you could always CC the Joint Commission on Accreditation for them to keep in their file for the next visit. What the heck - she deserves some discomfort in her life.

Noreen

Yes, the conclusions are the same - percentages vary slightly. If I can determine what I did wrong, I will correct the link.

from my history page, here's the CFS link

http://www.meresearch.org.uk/research/proj.../autonomic.html

Noreen-

Just wanted to add that my son's ped (Peter Rowe) was among the first to make the correlation between autonomic dysfunction and CFS here in the US in the early 90's. The correlation is undeniable and has subsequently vastly improved CFS treatment.

Julie

Julie-

Your son is fortunate to have Dr. Rowe as his physician but even more so to have you as his mom.

{hugs}

Noreen

Thanks for posting this. I can't get to the CFS article through the link, but I assume the conclusions are similar are they?

Summer-

sorry about that.

Yes, the conclusions are the same - percentages vary slightly. If I can determine what I did wrong, I will correct the link.

Noreen

from my history page, here's the CFS link

http://www.meresearch.org.uk/research/proj.../autonomic.html

"It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers."

Hi Reen-

We've talked about the XMRV virus pretty extensively here. This seems to be a little bit more than "bad science." Maybe, it's early science . Here's a link, albeit from the researchers themselves, describing the possible correlation:

http://www.wpinstitute.org/news/news_current.html

Here's an April 5th, Wall Street Journal Article, addressing the subject of the US blood supply:

http://online.wsj.com/article/SB1000142405...1295988608.html

You're right, nothing is conclusive...but the research, IF someone besides WPI can replicate it, is compelling. I LOVE the idea that we'll have a simple blood test and treatment someday.

And you're so right about the DX- pure semantics.

Julie

Hi Julie-]

I was following it in the science research blogosphere. By bad science I meant the question of some of their methodology and testing - they've gone back to very old testing techniques which are considered less than reliable by do many scientists on the ground (i.e. the lab) as the newer ones (DNA< RNA< YADA<YADA) weren't yielding the desired results. One of the authors of the 2nd paper did not want to go so public as she thought it was premature - her science methodology has been praised, however. My shorthand version was that it was not ready for prime time and you are right - r phrasing would have said early science.

Perhaps they will get somewhere, perhaps they won't - that is the nature of science and experimentation. As long as false hope is not being dished out, I do not have a problem with scientific research. I also don't have a problem with Canada being proactive and possibly erring on the side of caution for sake of the health of the people of the country.

It irks me that we do not fund research cleanly anymore. Scientists use to be able to work at an academic institution and do research. Now, there is no tenure and everyone better bring in a grant if they want to keep a job. The problem with this is that you answer the question asked - if the grantors are giving you $ for AIDS (e.g.), that is what you focus on. So, somehow an AIDS center will have an autonomic lab yet not link into other autonomic disorders through a search - they are being paid for AIDS. AIDS, by the way, is now considered a chronic disease in public health.

Thanks for the Wall Street Journal article, I hadn't seen it.

Noreen

I am very affected by bending over from the waist(i.e to pick something up from the floor,load the washing machine).

When I am in a bad patch,which I am at the moment,even bending forward very slightly to brush my teeth,wash face over sink etc triggers bad symptoms.

For a few seconds/minutes or so after bending I feel very short of oxygen and tachy,sometimes extremely lightheaded too.The effect it cumulative if i do more.

This symptom also happens after squatting and lifting my children.

I know that bending is listed under the what to avoid section here but I don't understand the mechanisms that make it so difficult.

It feels as though my heart struggles to keep up with the demands these positions place on it but being new to all things POTS I don't know why.

Does everyone with POTS feel like this?

Thanks.

Melanie.

Hi Melanie-

Since this is all new to you, a couple quick ways to adapt your environment might help you.

Step stools are wonderful to keep you from bending all the way down - if you put the laundry basket on one it stops you from bending over that last six inches. When you brush your teeth, put one foot on a step stool - this helps keep some of the blood flowing and helps you to remember to contract your leg muscles. If your children are young enough to pick up, whenever you are out and about, pick up old fashioned small wooden children's desk chairs. These will work for the children and for you - I still use my son's!

Hydrate, hydrate, hydrate - it has been shown that a faint can be put off by chugging a bottle of water. You have to make sure you are drinking a gallon a day and getting your salt and electrolytes.

I naturally used the squat as a preventative and probably put off getting diagnosised. You might actually have to work on your technique - strange as that might sound. Don't bend your head forward as you bend your legs - keep your back straight as you go down. If that doesn;t ring true or make sense to you ignore it.

Remember to conserve some energy for yourself. Post any more questions or concerns, this group is great and always willing to try and help.

Best of luck,

Noreen

Autonomic Dysfunction in Fibromyalgia Assessed by the Composite Autonomic Symptoms Scale (COMPASS) ? Source: Journal of Clinical Rheumatology, Mar 31, 2009

by Carla Solana, MD, et al.

April 9, 2009

[Note: The COMPASS questionnaire, developed by Mayo Clinic neurologists, includes 169 items covering different aspects of autonomic symptoms (problems with regulation of unconscious body functions such as heart rate, blood pressure, etc.). Responses are weighted to produce a composite score.]

Background: It has been suggested that autonomic nervous system dysfunction may explain all of fibromyalgia (FM) multisystem features. Such proposal is based mostly on the results of diverse heart rate variability analyses.

The Composite Autonomic Symptom Scale (COMPASS) is a different validated method to recognize dysautonomia.

Objectives:

? The main objective of our study was to investigate symptoms of autonomic dysfunction in FM patients by means of COMPASS.

? A secondary objective was to define whether there is a correlation between COMPASS and Fibromyalgia Impact Questionnaire (FIQ) scores in FM patients.

Methods: Design, analytical cross-sectional study. Our study population included 3 different groups of women:

? 30 patients with FM,

? 30 patients with rheumatoid arthritis,

? And 30 women who considered themselves healthy.

All participants filled out COMPASS and FIQ questionnaires.

Results:

? FM patients had significantly higher values in all COMPASS domains. COMPASS total score (54.6 +/- 20.9; mean +/- standard deviation) clearly differentiated FM patients from the other 2 groups (21.6 +/- 16.5 and 9.5 +/- 10.2, respectively). P < 0.0001. [Probability that score resulted by chance less than one in 10,000.]

? The majority of FM patients gave affirmative answers to questions related to orthostatic, digestive, sleep, sudomotor [sweat gland stimulation], or mucosal dysfunction. There was a significant correlation between COMPASS and FIQ scores (Spearman r = 0.5, P < 0.005).

Conclusions:

? Patients with FM have multiple nonpain symptoms related to different expressions of autonomic dysfunction.

? There is a correlation between a questionnaire that measures FM severity (FIQ) and an autonomic dysfunction questionnaire (COMPASS).

? Such correlation suggests that autonomic dysfunction is inherent to FM.

Source: Journal of Clinical Rheumatology, Mar 31, 2009. 15(2), PMID: 19342959, by Solano C, Martinez A, Becerril L, Vargas A, Figueroa J, Navarro C, Ramos-Remus C, Martinez-Lavin M. National Institute of Cardiology, Mexico City, Mexico; National Institute of Respiratory Diseases, Mexico City, Mexico; Hospital General Regional 45, Guadalajara, Mexico.

FOR CFS info here's the URL - Autonomic dysfunction in CFS

All of that was valuable information. Thanks all. I've decided to get the CoolSport. I also checked out some backyard misters and they're pretty inexpensive and definitely a good idea.

Thanks again

Post and let us know how you make out with your purchase - e.g. sizing, etc.

More and more of us will be looking for this as the months roll on.

Tks,

Noreen

I bought a CoolSport vest with an extra set of cooling packs at the beginning of last summer. We don't have good A/C and our house stays at least 80 degrees for a couple months out of the year. I wore my vest non-stop during those months. When we went on vacation, I wore the vest and brought a cooler filled with ice and the extra set of cool packs so I could change them out when the first set melted (which takes around 3 hours, depending on the heat). It takes about 30-45 minutes for the spare cool packs to get cold again.

I have Raynaud's and don't do well in heat or cold, but the packs don't get cold as regular ice. I think they only cool to 60 degrees or so. On hot days, I put on my cooling vest and get an instant pick-me-up. I also use a water bottle to spritz myself all day long.

The CoolSport vest and spare packs weren't covered by my insurance, and they were spendy but worth it.

thankful-

Your experience is extremely helpful. thank you.

2 questions-

Do you get a lot of humidity where you live and, if so, does that usually bother you or not so much as long as you have the Coolvest?

Does your insurance usually cover Durable Medical Equipment? I'm looking to get a script for one when I go to my new neuro at the end of May and my insurance covers durable med - I need to save $ for all the other medical costs not covered.

One thing I've used that has helped is a device called Artic Mist ( trademark) - a bottle filled with water and ice is in a neoprene bag around your waist like a waistpak - the botttle has a pump on it to create pressure and a tube running from it that will spray a fine ice mist on you or in front of you reducing the temperature around you by 10 degrees - extremely handy to have for moms at ball games and the like. I got it years ago at JC Penney for less than $25.

Noreen

It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers.

Noreen, I'm glad you posted that. I have not really looked into the research that led to this decision yet, but I'm planning to. Canada definitely wants to err on the side of caution because of serious errors in the past involving contaminated blood products. So, perhaps this really isn't a good indicator that the link is strong between XMRV and CFS. They just don't want to take the chance of having another tainted blood scandle like they did in the 80's/90's.

Thanks for pointing that out.

Summer

Summer-

While the reason may not yet be found, raising awareness is good especially if the dysautonomia component is focused on. I had been active in FMS support on the net since 1994 and a facilitator for twelve years of my local fibro/chronic pain group. When a rheumy specializing in fibro was moving his practice to upstate NY from NJ ten years ago he called me and we chatted. As he caught me in the evening after work, I was blunt and told him I thought that fibro was actually an autonomic problem. He agreed and said that he thought rheumatologists got it by default since neurologists weren't interested. He moved his practice, was a great guest speaker, became very active in the arthritis chapter and has helped many. I never saw him as a patient as by then I was dealing with much more than just FMS.

I really don't think it is too much to ask that all licensed medical professionals have a clear understanding of a vital component of human physiology - but it would seem that that is the current state of affairs given all of our posts here.

Noreen

I had a nurse from a trusted doctor's stalk me on this forum who tried to discredit me when I filed for SSDI. She read my postings on here. I have my suspicions on how the whole thing evolved, and I won't get into that here.........but never in my wildest dreams did I ever think THIS doctors office would employ a nurse like this, or the other nimrod that probably put her up to it. She basically tried to call me a malingerer in so many words. It was the worst thing that could have happened in my life at this time, and to this day I have developed major trust issues because of this. This is when I went back to my psychologist---I really needed him.

Maxine-

I somehow missed this post. Perhaps I have a bit of cognitive impairment - lol.

That behavior is unconscionable as well as unethical - I hope you reported her to her professional organization.

Like anyone would choose disability! - I still can't accept that I can't even type a post without problems and I have been typing since I took my mother's personal typing course in 5th grade (she taught high school) and have anxiety attacks due to not being able to spell -(part of my visual thinking - I have to see the word spelled correctly and I'm over 50 so I learned to spell everything correctly).

TTF - Thank The Forum - for teaching me what anxiety attacks were enough so I could recognize what was happening, associate the occurrence with hyration/meds and help reduce them, and locate my brain instead of beating up on myself for not being able to do something so simple.

Noreen

Thanks for sharing, Summer. Very interesting indeed! If Canada is taking these steps, I would hope that the US isn't far behind.

My son is DXEd with CFS and I have displayed the symptoms as well for much of my life. I hope the research continues and we learn more that could point to more effective treatment. I've got my eyes on this.

BTW, you are sooooo right. Who with CFS would be donating blood anyways. We barely have enough as it is .

Julie

You are right about that Julie. But just think, like so much else, it is dependant on which dx the MD puts on our chart. I've met all the diagnostic criteria for CFS for at least 12 years but do not carry the diagnosis.

I thought this was interesting and says to me that people are starting to take this illness seriously. I'm sure it's true the most people with CFS and/or dysautonomia are not well enough to donate anyway. The link between the illness and XMRV must be pretty strong for them to take this kind of measure. I thought some of you might be interested too.

http://www.calgaryherald.com/health/Canada...5203/story.html

'

It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers.

Oh Angela you poor dear {{hugs}}-

How absolutely horrid for you. I had to set an ankle brace after coughing and setting up a brief valsalva manuever (sorry for misspelling -I went out to dinner for my son's b'day and my IQ drops if I am vertical for too long). Are you coughing when these incidents occur or do they hit out of nowhere? For me, while I was not recognizing what happened as a cough induced syncope, I got paranoid enough that if I felt even a hint of a cough I leaned against a wall and bent over - holding onto something if I could - before I coughed. It helped.

My goodness, I truly hope you don't hurt yourself any more than you already have - you already know how dangerous it is and we all share in your anxiety over not having control. (I swear by Arnica ointment for bruises and hard knocks from falls)

Here's hoping you heal well and completely -

Noreen

I am happy to hear about anything that helps people feel better. I know massages are helpful to me. I hurt more at first then feel a little better.

My doctor told me that cranial manipulation is "bunk". I never tried it but by many it is considered "quackery". -

best of luck to you.

Kayjay-

Remember the first poster is being treated by a Doctor of Osteopathy - she is probably in fact undergoing osteopathic manipulation. There is a long tradition of osteopathic medicine and any graduate earning a D.O. is eligible to be licensed by any state and prescribe meds and tests just as any MD would.

If your doctor does not believe in Cranial Sacral Manipulation as taught thru the Upledger Institute that is his perogative - it has, however, helped many and is a non-invasive method of treating pain without side effects. I could not tolerate massage then and even less so now.

Noreen

There's some really good people out there who are broken--------broken hearts, brokens bodies, and broken spirits. They need really sincere, hopeful, mature, and kind hearted people to get them through this on going struggle with this illness, abusive doctors, cold hearted family and friends, and trolls who have nothing better to do then increase our misery even more.

We also have to rely on our inner strength and street smarts. I think a support forum can also make or break a good attitude.

Maxine :0)

Maxine-

Wonderful post. Quick question -do insurance companies idjits fall into the troll category or do we reserve a special cretin category for them?

Any dealings with the worker's comp and/or disability system could seriously land you in need of therapy - if you have the energy to go.

Noreen

I have been seeing a doctor of osteopath for cranial manipulation therapy, which I think may also be called cranial sacral for almost 6 months. I do feel like I am able to stay upright longer and more comfortably, but still am fatiqued easily and have chest heaviness as the day progresses. I continue to go to these appts because I on the one hand think it helps, but on the other hand, I am not sure. I have had pots for about 2 years, and the second year has been better than the first. Is there anyone else out there doing cranial manipulation and do you think it has helped you?

I had cranial sacral therapy for a while about 10 yrs ago performed by a massage therapist. I remember being without hip pain for an afternoon for the first time in 8 to 10 yrs. Could not continue due to cost.

IMHO, you are fortunate to have a DO who is actually practicing osteopathy. If the treatment is not adding to stressors - money, time, etc. I would continue. DO's have so much work that they are not apt to keep a patient coming back unless it is needed. My neurosurgeon's original medical degree is in osteopathy and I think it helps him to "get me" - the whole EDS hypermobility thing, etc.

Of course, the treatments are not a magic wand. The exercise and all the rest still is up to us.

wow I didn't know they added that to medhelp's website - thanks I'm going to add it now and actually use it

strike that! I already have it and forgot about it, oh my I'm really embarassed lol

Just goes with the whole Cognitive issues - check box.

I hope I feel like I have a brain cell by the time my BP monitor arrives.

Last summer I bought a cooling vest which has significantly helped me to be outdoors in warm weather. There are lots of old threads on cooling vests, if you're interested.

Thanks, I plan to ask my new neuro for a script for one when I see him at the end of May.

http://www.medhelp.org/user_trackers/gallery/dysautonomia

Hi-

This is a daily on-line tracker for meds, symptoms, environment, blood pressure, etc. designed to be printed in graph form so you can take it to your doc.

Url is above as I am having a horrid time with fine motor issues. I was amazed at the pre-loaded symptoms. E. g. for Urination you can check normal, frequent, or infrequent on any given day. I could not copy the symptom table text but it is extensive. It has pre-loaded meds - haven't seen one on here that isn't there.

The site has a Q and A answered by Cleveland Clinic docs so I believe it to be legit but don't have experience as of yet.

I share in case anyone is just starting a med journal like me and could find it useful.

Noreen

mkoven advice is excellent. A short version of the Alexander Technique might help also - when walking (even if all you can do right now if walk to the bathroom) visual a string running up your spine pulling up at the top of your head - if you keep this balance and control up while walking it helps strengthen everything.

What helped me after an extended period of deconditioning is a recumbent bike - I started with just 2 minutes, worked up to 3 minuted tid and now do 5 minutes tid.